Spinal cord injury: Multiple family group (MFG) education and support

Introduction

Damage to the spinal cord can be a life-changing event, usually occurring suddenly as a result of an accident, and presenting both acute and long-term medical effects to individuals and their families. Because these events usually happen unexpectedly, suddenly the individual is thrown into the chaos of the health care system. Rarely do people have any idea of the implications on future health, lifestyle, or economic consequences of this kind of event. The impact on the affected individual is profound, producing both paralysis and medical complications to many body systems. Medical prognostication is often uncertain, and many myths surround spinal cord injury (SCI; ).

Epidemiology of spinal cord injury

Over the past 50 years, the age at time of acute spinal injury has increased by a decade or more, but still, the event affects individuals in the prime of their lives, currently averaging 43 years of age ( ). Nearly 80% of all SCI individuals are male. As a result of the age at onset, consequent effects have major socioeconomic impacts on work-lives, family income, and life roles. Despite many improvements in motor vehicles, motor vehicle accidents represent approximately 40% of all SCI cases, with falls accounting for another 30%, gunshots 13.5%, and sports-related causes about 8% ( ). Medical issues such as transverse myelitis and intraspinal hemorrhages account for the remainder. Regardless of cause, the effect is hugely traumatizing.

There are approximately 17,700 new cases of SCI each year, representing an annual incidence of 54 cases per 1 million population. Because the pathology is often lasting, it is estimated that around 300,000 persons with SCI are currently living in the United States ( ). SCI related disability may affect the cervical, thoracic, lumber and sacral portions of the spinal cord structures, with higher level injuries producing more disability ( ). The physical impacts on the spinal cord may produce an incomplete injury with some functions retained or may result in a near-complete loss of function distally. Nearly 60% of all SCIs are at the cervical level producing tetraplegia, and 2/3rds of those are incomplete. Of the 40% remaining injuries producing paraplegia, half are incomplete ( ). Less than 1% of affected individuals experience complete recovery by the time of hospital discharge ( ).

Life impact and medical support

Everyday activities, from prior independence of basic life activities through vocational function undergo massive change. SCI greatly affects a person’s level of independence in mobility, self-care and economic well-being. A little over 30% of affected individuals are married at the time of injury, with 60% single or divorced at injury ( ). While nearly 60% are employed at the time of injury, by the end of year one post-injury only about 12% are ( ). As a consequence, reliance upon social support systems greatly increases. The level of such support systems varies greatly across the United States, rarely covering all the injured person’s needs, especially immediately following injury.

Medical care for acute spinal cord injury has changed significantly over the years, with improvements in surgical and medical management resulting in improved survival. But as the physiologic impacts of SCI are usually long-term, this presents a need for comprehensive rehabilitation in order to strengthen the areas affected and instruct the injured person in self-management skills including dressing, hygiene, toileting and skin care, in addition to teaching mobility skills such as wheelchair use and other supported mobility needs. During the 1970s, most SCI-affected individuals spent months (average 142 days) in inpatient rehabilitation facilities learning these skills, gaining competence in self-management, and educating families and immediate caregivers on appropriate ways of providing needed support. By discharge, these skills had been practiced, needs anticipated and support structures provided. During those years, the average length of stay in an inpatient rehabilitation facility for a cervical cord injury was around 5 months and during this period the individual often had opportunities for weekend passes to practice skills in their home environment. Persons with paraplegia stayed for 2 months or longer, with similar opportunities to practice home skills. During those years, the rehabilitation inpatient staff team frequently included physical therapists, occupational therapists, social workers, recreation therapists, vocational counselors and psychologists to teach, guide and support individuals with SCI in the areas affected by their injury. Health care systems have changed dramatically since then, with the overall average length of stay currently just over 1 month ( ). Rehabilitation staffs have shrunk as well, with only basic therapy needs provided in many American inpatient rehabilitation facilities. Specialty SCI rehabilitation hospitals may have much larger staffs and longer lengths of stay, but funding for such care is not available for many acute SCI patients. As a consequence of these systematic changes in care provision, there are larger burdens placed upon caregivers and patients.

The dramatic compression of lengths of stay result in a much busier hospital day, especially given that nearly 40% of traumatic SCI patients have other injuries in addition to their spinal cord and 80% will have undergone spinal surgeries ( ). There are common co-morbidities including traumatic brain injury and thoracic and abdominal trauma. Focus is on physical recovery, wound healing, pain management and other medical needs, as well as rehabilitation therapies and education. Individuals with significant pain issues have consequent learning difficulties that interfere with the teaching process. The burden of healing, coping, adaptation, and multi-tasking overwhelms even emotionally stable individuals. The cliché of drinking from a firehose is not an exaggeration. The inpatient stay period is intensely stressful for all, patients, spouses, family, and caregivers.

Spinal cord injury after-effects

There are common medical changes resultant from the injury. Bladder management poses issues for about 75% of individuals with SCI, with a variety of urologic adaptations needed, including intermittent catheterization, indwelling catheters, or some form of urinary diversion ( ). Medical complications of these alternative solutions may include subsequent urinary tract infections ( ). Bowel management may also pose issues, requiring modifications of typical routines, medications and physical techniques which may necessitate caregiver aid. Education regarding skin care is an essential part of the inpatient training process, but follow-through is critical post-discharge and this too may pose caregiver burden, especially if pressure sores occur ( ). The need for family and caregiver education is critical to support the person with an acute SCI both medically and with mobility needs.

The preponderance of SCI survivors (87.4%) are discharged to a private home ( ). Architectural accessibility of the home to mobility limitations more often than not presents significant problems, especially for those with higher level injuries. Thus, architectural barriers are routinely problematic, as 60% of individuals with SCI rely on a wheelchair for mobility, including both manual and powered chairs ( ). In many homes, bedrooms are upstairs, bathrooms are small and inaccessible to wheelchairs and entry and exit present their own challenges. Steps and stairs, narrow doorways, cupboards, and toilet areas cause difficulties for most at discharge. Only rarely is funding for architectural modification available. Transportation poses a common problem, as many vehicles are difficult to enter and exit for someone in a wheelchair and public transportation is often unavailable, especially for rural residents.

The changes in spinal cord injury care over the past decades are many, with some good news in reduction of medical complications, more sophisticated spinal surgery resulting in enhanced neuro recovery and better understanding of medical needs. But there is also less positive news in terms of the reduction in lengths of stay resulting in less opportunity for patient and family education, less medical oversight in the months immediately following the injury and less emphasis on community re-entry education. Community support systems are insufficient. As a consequence of these latter issues, the Multifamily Group Education (MFG) process poses a real opportunity in the long-term approach to the many problems posed by SCI.